April 12, 2000

Dear Managed Care Conferee:

In the very near future, scientists will have deciphered the entire human genetic code, providing human beings with more information about our health than ever before. Tests are already available that can detect genetic traits associated with particular diseases, and the use of such tests is expected to increase dramatically in coming years.

Genetic testing will improve our lives by providing information on how we can prevent future health problems, and cope more effectively with unavoidable conditions. But the ability to predict disease through genetic testing and family history opens troubling questions about discrimination, particularly in employment and health care.

As you begin to consider the House and Senate versions of managed care reform, we write to draw your attention to Title III of S. 1344, the Senate bill. We commend the Senate for including provisions intended to protect individuals from discrimination in health insurance based on genetic information. However, we believe that the provisions in the Senate bill as currently crafted are inadequate to meet the challenges raised by the extraordinary scientific advances of our time.

Without comprehensive protections covering both employment and health care, patients have reason to fear that their genetic information could be used as a basis for discrimination. Many health care professionals report that because of these fears many patients are reluctant to participate in important clinical studies that require genetic testing, slowing medical and scientific progress.

The undersigned organizations, representing patients, people with disabilities, consumers, women’s and civil rights organizations and many others, urge the conferees to retain and improve Title III of the Senate Bill in the final conference bill, by incorporating the following changes.

1. Add meaningful penalties and sanctions. As currently drafted, the provision for punishing violators is tremendously weak. Without meaningful mechanisms for holding violators accountable, even the strongest genetic discrimination protections become meaningless. Victims of discrimination must have the ability to enforce their rights in state or federal court and to receive appropriate legal and equitable relief.

2. Add protections from discrimination in employment. As currently drafted, the Senate bill bans discrimination by group health plans and issuers, but provides no protection against job-based discrimination. Thus, even if group health plans and issuers are prevented from misusing genetic information, the very same information could be used against individuals in employment. Genetic information must not be misused to deny people employment opportunities.

3. Prevent unauthorized disclosure of genetic information. One of the best ways to protect people against discrimination is to prevent the disclosure of information to those in a position to misuse it. There is no federal law that prohibits group health plans or issuers from disclosing people’s genetic information. We urge the committee to add strong protections against disclosure of genetic information.

4. Clarify plans’ limited ability to request predictive genetic information. S. 1344 provides that a plan can request (but not require) that an individual disclose predictive genetic information for purposes of "diagnosis, treatment, or payment." We are concerned that this formulation makes it possible for plans to obtain an individual’s genetic information in an overly broad set of circumstances. This language should be rewritten to clarify that when plans are seeking information related to payment for genetic services received, they may only request such evidence as is minimally necessary to verify that an individual received the services. In such circumstances, only individuals within the plan or insurance company who need access to the information for purposes of that claim should have access to it.

5. Clarify definition of "Predictive Genetic Information." As currently drafted, S.1344's definition of predictive genetic information is potentially confusing. The legislation states that "predictive genetic information" means information "in the absence of symptoms, clinical signs, or a diagnosis of the condition related to such information." This phrasing is potentially troubling, because "diagnosis" is a fairly broad and imprecise term. In fact, as doctors and scientists learn more about genetics, it is possible that someday they will consider the presence or absence of a particular genetic trait a "diagnosis." Thus, we suggest that this phrase be rewritten to read "in the absence of symptoms or clinical signs, and a diagnosis" (emphasis added), in order to clarify that the presence or absence of a genetic trait should not be considered a "diagnosis" if the individual has no symptoms or clinical signs, and genetic information would not be excluded from protection under those circumstances.

The definition of predictive genetic information in S. 1344 also specifically excludes information derived from "physical tests, such as the chemical, blood, or urine analyses of the individual including cholesterol tests; and information about physical exams of the individual." This language should be clarified so that it is clear that genetic information derived from either physical tests or physical exams is considered protected information. This can be accomplished by adding language such as "unless the physical test [or physical exam] reveals genetic information."

We would like to discuss these issues with you further at your convenience. Please feel free to contact Susannah Baruch at the National Partnership for Women & Families (202) 986-2600 if you have any questions about this letter. We commend you on your willingness to take on these critical and complex issues, and we wish you well as the conference continues its work.

AIDS Action

American Association of Occupational Health Nurses, Inc.

American Association of People with Disabilities

American Association on Mental Retardation

American Cancer Society

American College of Nurse-Midwives

American Civil Liberties Union

American Health Information Management Association

American Heart Association

American Hemochromatosis Society

American Jewish Congress

American Nurses Association

Association of Women’s Health, Obstetric and Neonatal Nurses

Beckwith-Wiedemann Support Network

Canavan Foundation

CARE Foundation (Cardiac Arythmia Research and Education Foundation)

Center for Patient Advocacy

Coalition for Heritable Disorders of Connective Tissue

Crohn's and Colitis Foundation of America

Digestive Disease National Coalition

DNA Dynamics

Dystonia Medical Foundation

The Ehlers-Danlos National Foundation

The Epilepsy Foundation

Genetic Alliance

Great Lakes Regional Genetics Group

Hadassah

Hemochromatosis Foundation

Intestinal Multiple Polyposis and Colorectal Cancer (IMPACC)

Little People of America, Inc.

Medical Journeys Network

National Association for Pseudoxanthoma Elasticum (NAPE, Inc.)

National Association of People with AIDS

National Coalition for Cancer Survivorship

National Hemophilia Foundation

National Incontinentia Pigmenti Foundation

National Marfan Foundation

National Multiple Sclerosis Society

National Organization for Rare Disorders (NORD)

National Osteoporosis Foundation

National Ovarian Cancer Alliance

National Parent Network on Disabilities

National Partnership for Women & Families

National Pemphigus Foundation

National Society of Genetic Counselors

National Tay-Sachs & Allied Diseases Association

National Tuberous Sclerosis Association

National Women’s Health Network

National Workrights Institute

National Women’s Law Center

Oncology Nursing Society

Polycystic Kidney Foundation

Religious Action Center of Reform Judaism

Ruth G. Gold

Spondylitis Association of America

Susan G. Komen Breast Cancer Foundation

The Sturge-Weber Foundation

The Title II Community AIDS National Network

Tourette Syndrome Association

Union of American Hebrew Congregations

University of North Dakota School of Medicine and Health Science, Division of Med. Genetics, Dept. of Pediatrics

Xavier University Health Education Program